Trust Your Gut

On Monday 22nd October, I awoke to pain in my abdomen in the lower left side, a pain that I’d never felt before. It was in a specific area and felt tender to touch. In the early hours of that morning, I had wolfed down half a Big Mac (a stupid thing to do when you no longer have a stomach), so my initial thought was that there was something “stuck”; an obstruction. I figured I would just stick to liquids that day, but even drinking was causing pain. So I made my way to the emergency room…

I explained my situation to the Doctor that examined me, and he too suggested that it could be an obstruction – a partial one since I was still able to drink fluids and use the bathroom. I was referred to emergency room at the main hospital for further investigation.

After waiting some time, I was examined by two different Doctors that asked a lot of questions regarding my medical history. Despite me explaining that the pain got worse shortly after drinking and that I didn’t think it was a stricture (the pain happened 5 minutes or so after drinking, which I figured meant it was slightly further down than the anastomosis – where the oesophagus and small intestine is joined together), the Doctor said he wanted a second opinion from a Gynaecologist.

At this point it was after midnight and I had been at the hospital over 9 hours. I hadn’t eaten anything for almost 24 hours – I was exhausted.

I sat down with the Gynaecologist and explained the type of pain I was having and pointed to the area that was tender. Immediately she said that the pain was too high to be anything gynaecological related, but that she would examine me anyway to rule this out.

Everything was normal as expected, so I was referred back to Akuttmottak and was admitted. The return journey was much more exciting! The transporter walked us both to the basement and we got onto a golf cart!  She drove us through the underground tunnel that connects both Haukeland Hospital and “Kvinneklinikken” (I had no idea these two buildings were connected).

Nothing much happened over the next few days. The pain was still there, I felt nauseous constantly and I struggled to eat and drink. On Thursday, I was sent for an X-ray with contrast.

After drinking copious amounts of barium liquid and laying in various positions, the radiographer could see that everything was moving through my intestines normally and that there was nothing stuck. He explained that the part of intestine that was causing pain had quite a few twists and turns. Since I was able to eat a bit more than previous days and was feeling a little better, I got discharged the following day. At this point, the surgeon (that had operated on me last year) suggested the pain could have been a number of things. That it may have been something that was stuck, and had since passed, that it could be bacteria from food (without stomach acid, it’s easier to get sick from food), or it could be adhesions and scar tissue from the first surgery – something I’d never heard of before.

Over the weekend, still in pain, I stuck to a soft diet but tried to consume as many calories as possible since I’d lost weight that week. As the days went on, the pain became excruciating. Shortly after eating, I would be laid down on my side, crying in agony. I took painkillers, but nothing seemed to help. On Wednesday 31st (5 days after being discharged and my 10th day in pain), I saw my Doctor, who referred me straight back to Akuttmottak.

That night, I was referred for an ultrasound. Apart from a few small gallstones in my gallbladder, nothing else was found and the cause of the pain was still not diagnosed. The next step was a CT scan.

Two days later, a few hours after I’d had the CT scan, I was told that I had high ileus and suspected adhesions. At this point, they couldn’t rule out a hernia, and that the only way to diagnose and hopefully fix the problem was through surgery. Since my last surgery was open, this one had to be open too as it would be too risky to do it laparoscopically. From that moment, I had to begin fasting and prepare for surgery. After the surgeon left, I sobbed uncontrollably. Although I was relieved that I finally had a diagnosis, I was devastated to hear that I had to go through another major surgery.

On Sunday evening, still on the waiting list for surgery, I was allowed to go home for the night. Although I still couldn’t eat much without being in a lot of pain, it was nice to relax at home and get a proper nights sleep.

After shortly arriving back at the hospital on Monday morning (my 15th day of pain), I was told that I was going down for surgery. I quickly texted B and my mum, packed away my things and down I went.

Upon arrival, I spoke with the anaesthesiologist and discovered that the surgeon was one of the three that had performed my Total Gastrectomy last year. This was a relief to me, as I felt safer knowing that it was someone who knew how everything looked inside!

A couple of hours later, I was woken up and moved to the recovery ward where I spent quite a few hours. Despite them giving me anti-nausea medication prior to surgery, I was dry-heaving constantly. They gave me various drugs over the space of a few hours, and nothing seemed to be working. Since water was making the problem worse, they gave me an ice lolly, which seemed to settle things… It was probably the best ice lolly that I had ever tasted!

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A few hours after Surgery

That evening, the surgeon came to speak to me and explained that the surgery had been a success and that they had found adhesions. Basically, it had formed a string that had wrapped around part of my small intestine – this explained the pain shortly after eating, the tender and swollen area of my abdomen and why food was coming back up. Luckily, there had been no permanent damage to that part of my small intestine. After the surgery, I was allowed to eat normally again and noticed very quickly that the surgery had fixed the issue since I no longer had pain after eating and drinking.

The pain from the incision however, was very difficult to cope with this time. The epidural wasn’t working well and the pain medication wasn’t helping. After trying different regimens, they gave me morphine, which helped a lot.

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Scar Update (Left before surgery, Right after surgery)

So now I’m going through the recovery stage again… Lifting restrictions for 6 weeks and no exercise – only walking. Although the problem was fixed, abdominal surgery (whether it be laparoscopic or open) carries a risk of developing adhesions so they could form again. But I have to remain positive and hope that they don’t. 😇 🍀

 

Checking the Tatas – Part Two!

Read Checking the Tatas – Part One!

Before leaving the hospital after the biopsy was taken, I was told that I would receive the results within 1-2 weeks. On the 18th May, I was informed that the small lesion was a fibroadenoma (as they had suspected), but that there were ALH cells present also (atypical lobular hyperplasia). I was therefore referred to a surgeon to discuss next steps.

On the 29th May, Bjørnar and I met with a breast surgeon. He explained that because of my increased risk of developing lobular breast cancer, combined with the finding of atypical cells, they wanted to remove the fibroadenoma along with some of the surrounding tissue. He explained the procedure to me and told me that it would be done using local anaesthesia. He also set me up for the procedure the following week.

A couple of days later, I received a phone call from the hospital asking if they could use a new method during the procedure. The difference would be that they would use a small piece of steed called a “Magseed” instead of a thin wire, to mark the lesion for the surgeon. I did a little bit of research and confirmed that this was ok to use. They said the only difference was that there would be more people in the room since it was a new method. 🙈

07th June

The first thing they needed to do was to implant the Magseed into the lesion. Since it wasn’t palpable, the Doctor used ultrasound to find the lump. Before making the incision, they used local anaesthesia and then implanted the Magseed. Luckily, I didn’t feel a thing!

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Waiting for Surgery…

After waiting some time, I was called into the operating room and was prepped for surgery. Since they were going to use an electrical knife, they attached an earthing cable to my arm. Then, using a metal detector-type device, they located the Magseed, but explained that the lesion was very deep and close to the muscle. Usually, they like to make the incision around the areola for cosmetic purposes, but explained that this would be difficult for them due to its location. Therefore, the incision would need to be further up. I said that was fine (hell, I have a large scar on my abdomen anyway, one more isn’t going to bother me). Then, they put a sheet in front of me so that I would be unable to see the procedure taking place.

Early on, I began to feel extremely dizzy and shaky. The nurse felt my head and said that I was quite warm, so they tipped the table backwards slightly, and placed a cold, damp flannel on my forehead. On a few occasions, they had to administer more local anaesthesia because I started to feel some pain – this happened as they cut deeper. Throughout, it was strange seeing smoke and smelling burning flesh, but I tried not to think about it too much!

Overall, the procedure took around an hour. Before leaving the room, I noticed a specimen jar on the table that contained the lesion. It was the size of a grape!

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Taken before the local anaesthesia wore off!

Since I don’t know much about atypical lobular hyperplasia, I reached out to No Stomach For Cancer, to ask if there was a connection to the CDH1 mutation. They forwarded my question to a member of their Scientific Advisory Council for insight, and below is their response:

“Lobular hyperplasia has a link to Lobular Breast Cancer and CDH1. Women with CDH1 pathogenic variants have ~40 % cumulative risk of developing LBC by the age of 80. In summary lobular hyperplasia is the intermediate lesion in the progression from a normal breast lobule and an invasive lobular carcinoma. Please see below a figure demonstrating the proposed progression of Lobular tumours.”

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Of course, hearing this made me feel quite uneasy. But knowing that I will be having annual ultrasounds, mammograms and MRI scans due to having the CDH1 mutation, helps to make me feel more at ease.

Results

On the 4th July, I received a phone call from the surgeon, informing me that the tissue was benign. This was a HUGE relief for me as the waiting period was the hardest… I’m just glad knowing that I will be monitored annually to keep an eye on things, and hope that the ALH cells don’t progress to anything more in years to come. 🤞

Incision – Update

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Proud to show off my battle scar! Healing nicely after a few hiccups along the way 🙈 The top part kept splitting open so it’s a lot redder than the rest.

I don’t think it looks bad to say it was done almost 6 weeks ago!

A Year of Knowing

One year ago today, (gosh that went quick) I opened a can of worms / was the day I embarked upon this journey / was the day I stepped onto this crazy rollercoaster ride…

Today I’m feeling positive – but realistic (hence me describing it as a crazy rollercoaster ride) On my down days, I tend to think that I’ve opened a can of worms! I’m only human!

Basically, I sent an email to the genetics department here in Bergen, asking for more information as to how I would go about having a test done to find out if I carried the CDH1 mutation that runs in my family.

After getting the relevant information from the Doctors in England, I took this information to my “fastlege” (Doctor) in Bergen the following week, and requested a referral to the genetics department.

01.08.16 – Contacted the genetics department

08.08.16 – Referral from my Doctor

04.10.16 – Appointment with a genetics counsellor – Blood test sample taken

08.11.16 – Results from blood test – CDH1 mutation detected

30.12.16 – Meeting with genetics counsellor to discuss next steps (opted for screening)

18.04.17 – First endoscopy with multiple biopsies taken from stomach

10.05.17 – Meeting with surgeon to discuss option of having a Total Gastrectomy in the next few years

18.05.17 – Results from biopsies – Signet ring cell carcinoma detected in one of the samples taken. Decision made to have TG this year

14.06.17 – Second meeting with the surgeon to discuss the TG

21.06.17 – PET/CT scan (awaiting results)

 

As it currently stands, I am still scheduled to have my TG on the 26th September. I haven’t received the results from my PET/CT scan so I can only hope that no news is good news…

 

 

 

The Dreaded Phone Call

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Still feeling a little bit blurry headed after the 17th May Celebrations in Norway the day before (which, by the way was fab!) I struggled to comprehend the news that I had just received on the phone. The surgeon, that I had met with just a week earlier, had just called to let me know the results of my gastroscopy. All biopsies, apart from one, had come back normal. The news I didn’t want to hear was that one of them was showing signet ring cell carcinoma. Fuck.

The strangest thing is that I remained calm as he spoke to me; I didn’t even cry for a while afterwards. I simply couldn’t. I felt numb and confused. The surgeon suggested that I talk over the news with my family, and advised me to call him again as soon as possible to schedule my total gastrectomy (sooner than I had hoped to do so). This could mean no summer trip to England, no Engagement party with my family and friends, and no trip to Amsterdam. For now, all (fun) future plans are on hold.

So what did I do? Well, after breaking the news to B and my family, I poured myself a very generous glass of wine, ate a large slice of cake (leftovers from the 17th) and had a good, long chinwag with one of my close friends. ❤

It’s been a few days since I received the news and there’s still a few unanswered questions that I need the answers to. Does this mean I have to have chemo? How soon should I have the surgery? What if it’s already spread and they can’t find this out just yet?

Perhaps it’s a blessing in disguise that they found something. Now I know I have to have the surgery. I just don’t like having my life dictated by this. It’s only been six months since I found out that I had inherited the genetic mutation, and now I have to deal with this new piece of information. It really hasn’t been enough time for me to get my head around all of this, but with each day that goes by, I feel a little bit more prepared and accepting of the situation.

 

 

 

It will never be the perfect time…

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Today I cried; something I’ve struggled to do for the past few months thanks to the antidepressants I’m taking. I’ve always been skeptical of taking such a thing, but over Christmas, my anxiety was getting progressively worse as I struggled to come to terms with the fact that I was walking around with a potentially ticking time bomb. I felt like I had no other alternative than to try the medication, and to be honest, it has helped. My health anxiety is under control and I feel a lot more calmer, but of course not everything is peachy… I’m unable to express my true emotions. Instead, they stay bottled up inside of me and I am unable to release them.

That was of course, until today…

I guess I thought that I would feel a lot more prepared for surgery after meeting with the surgeon, but if anything, I feel just as worried, afraid and sad about the whole situation as I was before. Perhaps I should have gone to my appointment with no expectations.

I know there will never really be a good time to have a total gastrectomy, but after doing a lot of thinking, I decided that I should do it early next year. He asked me why I wanted to wait until then, so I told him the truth. It’s because I’m not mentally ready right now and still need time to prepare for such a life changing event. Besides, we want to get married in 2019, and I don’t want this decision looming over me for years to come.

So, my goals over the next few months are to wean off these “emotion suppressive” antidepressants, continue seeing a counsellor to help me overcome my health anxiety and get both my body and mind as ready as it possibly can be to say goodbye to my stomach in Spring 2018…